Feeling Better

Finally some good news, Paige seems to be feeling better. She's eating, smiling and even told off Sam for taking her pink marker!

Here they are colouring with Russell's supervision

 Paige finally went to the playroom and was clearly having fun in the car, that's a big laugh on her face :-)

She needs to have at least 48 hours fever free to be liberated from the hospital, so hopefully she's on the mend and she'll be out on Sunday. Russell continues to spend the night with her at the hospital and Sam and I are at home.

She's home :-)

Paige was discharged today :-) She's still a bit weak and her tummy isn't yet better but her mood is already on the mend, I got smiles and giggles at lunch time. In fact when Sam came home she rushed over and helped him to take off his coat then they shared a warm, long hug :-).
Sam is thrilled that his sister is at home and so are we. It's strange what can make you happy during these times, Sam and I went food shopping and I found a hazelnut drink and an Almond Milk that Paige can have! I must admit that I smiled all the way around the grocery. Poor child hasn't had any milk since she's gone dairy free more than a week ago.

This is her snacking last night

 I deliberately didn't post this last night as she started to feel warm by 8 ish, I didn't wank to jinx her but as it turned out nothing mattered. She was a bit miserable by bedtime and we all fell asleep at about 10.30pm. Sam came screaming and running into the bedroom at 2.00am and when I felt her she was burning up, a temp of 38.7C. Russell took her to the hospital and she will be there for a minimum of 48 hours and on anti boitics until her cultures are back :-(. So we'll def be spending the weekend at the hospital, because she is neutropenic they'll probably find it hard pressed to allow her home between doses of anti-biotics until she is really well.

Dex now complete

The last dose of Dex for this phase was given this morning. She has been taken off her IVs and will now be observed for 24 hours and possibly be home tomorrow, if she can manage 500-600mls of fluid on her own. Her hair is falling off rapidly and she continues to only want to wear Sam's pj's as below

Her mood is much of the same, very grumpy and we got one giggle tonight :-) Her tummy seems to be settling and I'm quite looking forward to a less grump girl by tomorrow.
Sam cried all the way home from the hospital tonight because he wants to stay with Dad and Paigey.....

Still at Hotel QA

I spent the morning with Sam and Russell stayed overnight with Paige. She slept all morning and had a good lunch. Dr Millard was happy with her improvement over the last 24 hours and felt that we could be discharged by tomorrow after having 48 hours of hydration. If Paige continues to eat and drink and look well. By this afternoon however she seemed quite uncomfortable again, and had a pretty bad tummy so I am not so sure that we will be home bound tomorrow.
Tomorrow is her last dose of Dex until she starts maintenance, so I expected that we will have the worst of her sick tummy tomorrow and Thursday and that hopefully we'll be home by Friday.
I'm home again with Sam and Russell is doing the night shift. Hopefully this is the worst of it and we'll have our happy little girl back again in a couple of days. Despite all her pain and weakened state she continues to hold fast on her independence! She continues to feed herself even though she is barely able to lift the spoon and will only accept help after many failed attempts and we're only allowed to give her a few spoonfuls until she wants to do it herself again. We also got a couple of smiles today for which we were extremely grateful, hopefully we'll get some more tomorrow.

Back at the Hospital Again

Different day, same Paige, except her tummy has worsened overnight and she seems weaker....

We arrive at clinic at 3 ish and went in to speak with Dr Louise Millard and Angela the dietician right away, all the while Paige is moaning and looking very sorry for herself. Before even examining her Louise looked at me and said that she didn't like how she looked and we may have to stay for fluids. Bloods were taken and cultures requested.
So once again we will spend the night at the hospital, while she has IVs overnight, she does look dehydrated and is quite miserable, just 3 more doses of dex to go......

We'll probably be at the QA for 2-3 days

Another dismal day for Paige with us giving her syringe after syringe of medicine and my constant assurance that changing her nappy will not hurt. Of course she doesn't believe us anymore :-(
Not much has changed today, she is still very weak and despondent. Her day is spent eating puffs of corn, crying and lying in bed. She can cope with bouts of about 15 mins out of bed and she is exhausted again.
Samuel has been an absolute star in all of this he is extremely sensitive to Paige's inability to have any chocolate, yoghurts and generally any snacks at all. He will always ask "Mummy is Paigey allowed to have this?" or will quickly fill his mouth in the kitchen before going into the lounge if she is there. He is also very affected by seeing her so ill, even said to me on Friday when we were discharged from the hospital

Samuel: "Mummy Paige is never, ever, ever again to have any chemotherapy"
Me: "why"
Samuel: "because it makes her sick and she has to stay at the hospital"

Tonight I asked for his help to distract her when I needed to change her nappy but he has just come out of the bath so he said "Mummy give me two minutes to get ready, ok?" he then rushed over to her room, caressed her head and sang her a song, she still cried so he dashed over to his room to get her a story book........

This shot was taken this afternoon during her 15 mins being out of bed, it was difficult, if not impossible to get a shot of her smiling so I gave up and decided that I would use this one anyway, her pjs don't match because the pants/trousers were soiled and she doesn't like being changed! This an expression that we have unfortunately become quite used to.

We've still got two more days of Dex. Every night I pray for Paige to get better and be in less pain and for me to have enough wherewithal to make it through the day.......

We're Home

What a nightmare week this has been!
Paige's tummy continued to be runny and she became weaker and weaker, by Monday I had carried her around whenever she needed to move without even realising it. Other than that she just lay on the bed motionless for hours on end till she fell asleep. By Monday night I was waking up and checking to make sure she was still breathing.
Tuesday morning she tried to get out of bed and fell down, that was the last straw for me. I called her specialist nurse she suggested that Paige be reviewed by a doctor sooner rather than later. She fell asleep soon after my conversation so I got ready and packed a back for a possible overnight stay. She woke up about noon and was too weak to even speak, so Sam and I put on our super speed mode and was out of the house in 15 mins! On the drive to the hospital I kept checking on her to make sure she was ok. Dr Millard agreed with me that whilst she didn't have a temperature, she had never seen Paige like this and we should start IV fluids and anti-biotics immediately just to be safe. We also discussed her diet at length and in the end agreed that she needed to be completely dairy and soya free.
Of course we were admitted with limited entertainment of the question "how long will we be here?". We were again reminded of how lucky Paige has been to make it this far through her treatment without being ill. Apparently her current state is par for the courses for an intensive block of chemo. Each successive round of chemo knocks then down even further and their bodies are not well enough equipped to completely heal before the next round starts again.

So the way forward:
1. Complete dairy free diet
2. Anti gastric medicine 2 days before the start of steroids, all the days during the steroid and at least two days after the last dose of steroids. This will hopefully reduce the impact of the steroid on the lining of her stomach.
3. Review diet in 6-8 weeks time. 


In the meanwhile Paige has been given a vile milk powder made from amino acids that she refuses to drink. In fact she tasted it and thought it was the straw that was bad, so she tried three different ones and another cup before deciding 'no way mummy.' I tasted it this morning and nearly vomited and that was literally just a drop of it. So it's going to be a difficult couple of weeks for all of us, she's already pointing to the fridge and asking for 'milk' and 'cheese'. As soon as she is strong enough she'll push the stool over and try to open the fridge.

She's still very weak and spends most of her time lying in bed, or snacking or crying. Her tummy seems to be getting better we're down to two manageable poos per day. The good news is that we are at home .......Her next review on on Monday next week. But her neutrophils are ni so if she strikes a temp it's back to the QA for us :-(

Hello Kitty

Paige, enjoying her new toy, a lovely gift from best buddy JoBo. She has been in the hospital for the last three days..this latest round of chemotherapy has hit her hard. In addition to being very tired, it's payed havoc with her digestive system. She has been on a lactose free diet for the last month, but in the last week she had very bad diarrhoea and lost nearly half a kilo. Lisa was so concerned on Tuesday that we called the hospital and Paige was admitted, with an immediate IV to replace the lost fluids, and a course of antibiotics. 

The dietitian and doctors have decided that she should steer clear of all milk and milk-like products (we had bought soya milk, soya yoghurts and Lactofree products). Now only non-dairy butter will be allowed (due to the small quantities). This is shame because she loves the yoghurts, and they are a great way to get calcium in her diet. Now she will probably have to take a supplement. 

I stayed with her last night and today and she is looking a bit better, and eating a lot better. She wolfed down two sausages for lunch! However, she can't decide what she wants to eat. We went through the entire stock of snacks several times today, but only the carrot puffs were a winner. The chemotherapy affects her tastes and I guess that, after each round, everything she liked before tastes different. She ate blackcurrant jam on its own this morning, probably because it has a strong flavour (and is sweet). Given the limited selection of foods that she can eat, we shall have to try and flavour up vegetables with spices such as black pepper, turmeric, cardamom and ginger, the last two of which at least aid digestion.

The course of antibiotics will run until tomorrow, but Lisa thinks she will need to remain in the hospital for another few days. At least we have our own room, but Sam is missing his sister, and his mother. So fingers crossed that she will be home soon.

While we continue to battle Paige's illness, in Barbados yesterday a sailor lost his battle with another. A great sailor, a great businessman and a great guy. RIP Shane.

Still Sick

Paige's tummy was a bit better today in that we didn't have to do a complete strip down and bath, but she is clearly still in pain based on her sad, pained expressions and behavior when we need need to change her. However just when I thought things were getting better as I put her in the car this afternoon so that we could collect Sam from school we had the biggest projectile vomit. Let's just say that her car seat is still on the ground in front of our house after my failed attempt to clean it. Strangely though she was starving right afterwards and wanted to eat more of the same risotto that I made for her! I think that she ate too quickly and it made her stomach upset.
Dr Morgan finally returned my call with an apology late this evening and suggested that we start her with Omeprazole a gastric inhibitor, she also agreed in principle that we could switch her steroid from Dexamethazone to Prednisolone but would speak to Louise Millard on Monday to confirm, hopefully this will provide some relief to Paige, her next round of steroids start again on Wednesday next week.
We're all looking forward to a quiet weekend that is poo and sick free so that my beautiful baby's stomach can heal itself.

Our lives are full of Poo !

Literally, we've been up to our eyeballs and poo and I haven't been able to update the blog. Paige has had a sick tummy since Monday I have never seen and smelt so much bad poo in my entire life. Each change required a complete strip down a bath and new bedding. So a pre-wash, and an extra rinse at 90C later we finally have some clean pjs and bedding again!that the clothing that I kept of course, quite a few pieces have gone straight to the nappy bin!
Her diarrhea and disposition has been so bad that there was some doubt whether she could go ahead with Chemo yesterday. Wilf walked into the room and agreed that he had never seen Paige looking so sad and pitiful before. In the end Dr Deem declared her well, albeit with a very sick tummy and suggested that we should proceed. Of course after Chemo she ate all the food that they brought for her, it was such a pleasant site. When she came home she walked around a bit and even smiled briefly.
Last night and this morning she continued her diarrhea, just lay around looking exhausted. She fell asleep again at about 10.30am and woke up ravenous. Finally by about 4pm, her tummy settled down and she started smiling again, and even gave us cuddles. She ate a hearty dinner and then went to bed. I think that it's the Dex that's upsetting her, unfortunately she has to have another round next week and then again for 5 days every month until her treatment ends in June next year. Oh happy days.
Fortunately for her, her next round of Chemo is next week Wednesday, so she can have a much needed break until then.

Demon Dex Day 5

She woke up smiling at Sam this morning and said "Mr Popoos" so that was a good start she even managed some chocolate milk for breakfast. When we stepped outside this morning it was snowing, very light flurries but snow nonetheless and they loved it, Sam even tried to tasted> Of course he quickly complained that it was wetting his glasses!
She was a bit better today not much crying but still needing lots of cuddles, my arms and shoulders are now paying for that, so this will definitely be a short entry. Another strange effect of this Chemo is that she is refusing to have a bath, one of the events that she looks forward to most. Her tummy is also obviously affected and she doubles over with stomach cramps. To top it all off those two new canines are popping through.
Tonight at bedtime she was briefly back to her old self giggling and throwing herself on the bed, Sam and I even got cuddles and kisses from her, on a normal day kisses are quite few and far between so it was a welcome treat for both of us :-)
Tomorrow hopefully she'll be even better and eat some food! Pity though as soon as she recovers it's time for the next round on Wednesday - how cruel is that?

Demon Dex Days 3 & 4

I was simply too exhausted to write yesterday, Paige cried from the moment she woke up till she fell asleep at night, I guess she just felt so rotten that she wanted to communicate that really loud and clear. It does wear on you though by midday you just need to poke your face out the window and feel the cool 3-5C breeze your face to clear the senses.

Today on the other hand the clouds cleared and we saw a glimmer of our beautiful Paige shining through. She painted, coloured, drew on the chalk board and had lunch too! We even did some minor shopping together as a family :-). I guess the Peg on Friday really did her in over the last two days. At least she can tell us that her jaw is hurting as well and we can treat that, the other symptoms not so much. She was so alert today that she never slept, so she was in bed by 6.00pm and asleep, Sam on the other hand not so much, so since I had 10 mins to spare while the roast pork sat, I've now updated the blog :-)

This week I hope will be calmer than last week, she'll have Chemo again on Wednesday and we get a break from clinic tomorrow, so here's wishing that she continues to eat and put on some weight to take her through this horrendous delayed intensification..........

Demon Dex Day 2 and Peg

My poor baby screamed her heart out during and after her Pegalated Asparagianse today, afterwards she just lay in my arms and felt sorry for herself. Thankfully this is the last time ever that she will have this particular chemo administered. She kept pointing to the spot and crying......

We came home and she lay on the bed for awhile, then had some fruit and we went back to bed for a nap, she eventually fell asleep and I had to wake her to get Sam at 4.30pm. Of course we had another 2hr stint of crying this evening despite my best efforts to entertain her. I think that she's teething again which isn't helping the already painful bouts of Chemo she has had this week.

Hopefully the weekend will be better with Russell to help entertain her

Day 1 of the Demon Dex

I must say that even though I think I can prepare myself for the effects of dexamethazone, I'm really only kidding myself.


Poor Paige already looks pale and was a bit wobbly today, she fell over quite a few times but luckily didn't hurt herself. She's not eating much and is alreday miserable. I'm not sure if it's yesterday's Chemo or the steroid that's making her so miserable. It is really quite heart wrenching to watch her be ill as she gets older you can see that she is isn't her usual self and she expresses her pain very quietly and sadly just folding her arms and lying face down wherever is nearest even if it's on the floor.
When she eventually fell asleep I must have dosed off and even Sam realised how exhausted I was cause he let me sleep for an hour! I woke up in a panic, ran downstairs and  found him where I left him sitting on the sofa watching TV, he said "mummy why don't you lie on me and borrow my blanket" I did of course and again woke up 45 mins later with the poor child scrunched in the corner of the sofa and stroking my head gently. He must have slipped out from under my heavy head and just let me sleep. How on earth does a 3 1/2 year old have such empathy? Sadly though if I am this tired, I can't begin to imagine how Paige feels as she's the one that's actually had the Chemo, all I did was watch and entertain her as best as I could.

It's really not fair on the kids, Paige has people poke and prod her all the time, then she's given all these nasty drugs that affects everything including her senses. At dinner time she started with a biscuit curl, then moved on to plain chocolate, then orange flavored chocolate, then vanilla soya pudding and eventually she got to her rice and chicken. She was obviously trying to get to something that she could taste. All the while she was crying, she cried for at least 2 hours this afternoon. In the meanwhile poor Sam is trying to have dinner and make her smile and cope with a completely frustrated mother.

Anyways, tomorrow is another day and we will head down to QA again after dropping Sam off to school so that Paige can have that horrible injection. I am a bit nervous as Paige's specialist oncology nurse Wilf will not be there :-(

Back on Track

Clearly my daughter decides when she would like to start her Chemotherapy and when I've had enough frustration. Certainly the last couple of days have been extremely frustrating.

Yesterday we headed down to QA after dropping Sam off to school at 1.00pm as planned and we encountered the same issue of her line being completely blocked, so the Starfish Matron Lorraine who was looking after us yesterday quickly arranged for an X ray to be done. By 2.15pm X ray was done and we waited for a plan, and we waited, 2 hours and some later we were still waiting and by then even the chair and buggy blocking the door couldn't hold Paige in the room anymore. Of course our little miss Paige can now open doors all by herself! Finally we were told that if they could not clear the blockage with another dose of Urokonaise that she would be scheduled for a replacement Central Line on Thursday. A replacement means surgery, an overnight stay at Southampton General, not to mention the stress and trauma that goes along with it. A full blood count was also needed and that was taken one tiny drop at a time from my poor daughter's fingers :-( She was not happy about that at all, and neither was I. It was all too obvious to me however that they were all stumped by the blockage.

So again after dropping Sam off to school this morning at 9.00am, Paige and I reluctantly headed down to QA to meet with Wilf for Day 3 of the blocked line. Finally after much effort from Wilf we had blood!!! Plus her blood results were back and she has a whooping 1.7 neutrohils - YAY. Piam Brown confirmed that Chemo could start today. So after a further infusion of Urokonaise we left QA at 1.00pm and got to PM by 2.00pm. Unfortunately we weren't seen till 4.00pm and Chemo didn't start till 4.30pm, but hey we started delayed intensification and Paige is in ripping form.

So after three very frustrating days, and lots of hanging around doing nothing for hours, Paige has finally started her last block of intensive Chemo and we're chugging along again.
Today she had
1. doxorubicin - the chemo that makes her hair, eyebrows and eyelashes fall off,
2. vincristine - the chemo that makes her walk on her tippy toes.
Plus seven days of the dreaded dexamethazone, which is the steroid that makes her COMPLETELY miserable and out of sorts. Later this week she'll have Peg Asparaginaise which is 'intra muscular' and very painful.

So a special thank you to Elfrieda your payers worked really well and we are back on track. Now some much needed sleep for me....

Central Line Blocked :-(

Paige and I were supposed to be enjoying a quiet day at home and had been previously excused from attending clinic at the the QA this afternoon. Clearly Paige had other ideas! When the community nurses arrived at 11.00am for routine bloods and a bung change, there was no blood in sight. We hung her upside down, sideways, jiggled her about, got her to run up and down and play but no luck. We were obviously destined to go to QA today. So we met Wilf at noon and he administered a drug called Urokinase which was quite a fiddly job, but she was really good. Anyway, we were back home by 2.00pm and we have to return tomorrow, 24 hours later to see if the drug has worked. Fingers crossed that it does, otherwise we'll need a four hour infusion of some sort. Didn't pay attention much as I really need this first drug to do the trick. 
She's been so well over the weekend, eating and drinking and playing loads with everyone.


Enjoying some strawberry jam and a serious look....

and today settling down with a lactose free chocolate and Samuel's baking hat!

Her hair has grown so much, it actually felt odd when I had to shampoo it recently :-).


I was quite looking forward to improved results and finally being able to resume her treatment this week... Wishing us good luck for tomorrow.

Chemo still delayed

Wilf phoned this morning with Paige's blood results and it's not good, she still has no neutrophils whatsoever and her Chemo will be delayed for another week. This has happened so many times that we should be accustomed but it is still extremely worrying to me that she takes so long to recover. You can tell that she feels like crap though, she's very clingy and wants to be held all the time. My arms are about to fall off from holding her so much. Her appetite has dipped a bit as well, again, all goes with having no neutrophils. Please note that when I say no neutrophils I mean it's so low it won't even register!
Struggling to find the brighter side at the moment........

Back at Hotel QA

Yesterday all went well with Paige's Lumbar Puncture, and Samuel was actually quite helpful at times in terms of distracting her and also holding open the doors for me. Paige showed Dr Bevin how to use her stethoscope and then lifted her shirt so that Dr Bevin could have a better listen, so funny!
Anyway we came home and played then Paige went down for a nap, she woke up at 4.30pm crying and boiling hot, she had a temp of 38.5C, so we were off to the QA. She met the criteria so we'll be there for a minimum of 48hours until the cultures are back. Her neutrophils are also still quite low at 0.1 and her CRP is 7, so something is going on, we just don't know what it is yet.
I must say though that the team at QA really spoil her, the play specialist came bearing gifts of a brand new tinker bell dress as well as duplo and cars for Paige to play with.
So we'll be in the hospital for the next couple of days

Delayed Intensification II

Never a dull moment with my Paigey Lou. She's started to potty train herself, she wanted to sit on the toilet yesterday so I took out the potty. Then today every time she needed to do a poo she took off her trousers and sat on the potty with her nappy and did a poo. She did this three times by the way! She is so clever my daughter :-)

Anyway Paige was due to start her delayed intensification tomorrow with an Lumbar Puncture followed by Vincristine and Doxarubicin in the afternoon, this is the Chemo that makes all her hair fall off :-( But her neutrophils are too low at 0.1 to start, so after being told everything was cancelled, we've now been asked to bring her for the LP tomorrow and we'll test her blood again next week and hopefully start her Chemo next week Wednesday. Whilst I'm really not looking forward to this last intensive block, I am quite disappointed about they delay. Last time her hair, eyebrows and eyelashes fell off.

Paige is looking so well now, despite her low count. Her poo finally made it to the lab and it has tested positive for sugars, it now needs to be analysed further to determine the specific sub-type. This apparently will take weeks to be completed. So tomorrow we'll aim to get to Piam Brown bright and early at 8.00am, so that Paige is first on the list and we can come home early. In an effort to keep Sam in the process he'll be going with me to the hospital for the first time, good luck to me.

Happy New Year

Happy New Year to everyone (albeit a couple of days late!)

Paige ended the year with a very sore tummy and neutrophils in the pits. She is very clearly lactose intolerant to the point where 2 oz of milk has a severe impact on her...poor little heart :-( Fortunately she seems to be on the mend and had gained a small bit of weight and her neutrophils seem to be on the rise. I am not convinced that her sore tummy is only due to a lactose intolerance but the consultant has advised that we need a clear week of no lactose to confirm same. luckily she did a poo at clinic so they now have a 'fresh' sample to test. Her previous sample was lost in transit.

Her final block of intensive Chemo begins on Jan 10th, so not such a great way to start the year but at least it's hopefully the last intensive block and she can then move on to long term maintenance.

Here she is having juice instead of her usual milk for breakfast